Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

My meds were changed to PTU 150 mg, three times daily and Propanolol 40 mg, three times daily. (Note: 5 days later, my propanolol is 40 mg twice a day).

Can someone please explain what all this means? I obviously have made a remarkable recovery in a short amount of time. Is there anything I should be aware of when eating? I keep reading dairy is bad but I drink 3 shakes a day with ensure and ice cream (I lost 15 pounds in 2 weeks prior to the thyroid storm so I am trying to gain weight back).

Also, my doctor says to take the PTU three times daily divided evenly during my waking hours. Is this okay? I would be without any PTU for about 8 to 10 hours at night. I worry about another storm. My anxiety is thru the roof right now.

(I am repeating my response that I sent to you by PM. Plus this is also Friday, not very many people post on Fridays, unfortunately!)

Hi:

Thank you kindly for letting me know I try to word things to put people at ease. I try as best as I can.

I'm sorry if you didn't get any responses. I am experiencing major computer problems as well as the Internet cable that is causing problems. We've been having problems on and off for about three weeks now. I haven't been online much and only when I am able to use my 17 yo son's computer which is the case now.

I will keep things very simple right now. I suggest you take the PTU every eight hours which would be something like 7 AM, 3 PM, and 11 PM. Or whichever sleep schedule you are on, will work out just fine. This will be during your waking hours anyway for every eight hours.

As for your labs, ask for a Free T3 because it corresponds with the Propanolol you are taking. T3 Uptake or other T3 will not be the ideal tests to see how you are doing because these are affected by our hormones, what we eat, etc.

Ask for labs every six weeks (every four weeks is better), on the average, of the Free T3, Free T4, and TSH, especially. You want to get the Free Ts to the mid ranges of the 'normal' ranges of the labs and then slowly adjust both meds, PTU and Propanolol. The FT4 corresponds with the PTU.

See if you can get thyroid antibodies tests done of the TSI (Thyroid Stimulating Immunoglobulins), TRAb (Thyroid Receptors antibodies) and TPOab (Thyroid Peroxidase antibodies). This will check if you have Graves' Disease.

As for diet, I hate to tell you this, but Iodine is what we need to avoid with the thyroid disease. The milkshakes/protein shakes have a lot of Iodine in these. It is quite likely it set off your thyroid problem. Iodine is used to wash the cows' udders after milking.

I would get a small notebook, write down your diet for the day, pay attention to any foods/drinks that will set off your heart rate and any hypER symptoms. Do this daily and look for the patterns to what foods/drinks 'triggers' your symptoms. Then you will have to avoid these otherwise you could never be able to minimize your thyroid symptoms while on the PTU and Propanolol.

I will post more in details about the diet and triggers soon on the board.

It will take your thyroid symptoms to settle down about six weeks after beginning the PTU/Propanolol (even sooner) to use up the excess Iodine stores in your body.

Don't worry, you will be fine. I had a suspected thyroid storm too and was in the hospital as well. It happens to so many of us.

Thyroid storm is no joke. I'm very glad that you survived it! Not everyone does.
I was diagnosed with thyrotoxicosis in late Dec 2007 and had RAI by early January 2008. They called me the Incredible Vibrating Woman at the nuclear medicine facility where I was properly diagnosed with Graves' Diseae and given the RAI.
I wasn't given the medication option. I don't know if age makes a difference. I was 50 years old at the time.
Terri

I had a thyroid storm last august, and I know what you mean. The Dr in er said I was very lucky to survive. heartrate was 202 and blood pressure 258/120 I went into afib and in hospital 4 days. I was in miss on vacation. What a vacation! When I was stable, we came home and I had my thyroid removed and now on synthroid. I have my good and bad days but am on medication to keep heartrate normal. gained about 20 pounds. I am still having eye problems, but opth keeps saying it will dye down.......still waiting. good luck to you and hope you get well.

I was experiencing the beginning of a storm when I was diagnosed. My heartrate was in the 190's, I was throwing up, had the worst abdominal cramps of my life, had an elevated temp, and was shaking horribly. It was the worst feeling I've ever felt in my life. I thought I was going to die right there. I am not on the maximum dose of beta blockers and methimazole. Thyroid storm is no joke.

Hey Kayla!
Were you under a lot of stress when this happened? It seems we all were before diagnosis. Does anyone in your family have thyroid issues? It's usually inherited as it is auto immune which seems to run in families. Mostly the Mom's side but I think I got it from my dad's side, my Mom doesn't have it. Have had cousins and aunts, (paternal) who had Hashimoto's disease.

im just here to give and get support to everybody living with Graves’ disease I have been diagnosed with it since the beginning of last year 2016 and let me tell ya the ups and downs come and go it’s not about haveing Graves’ disease it’s about living and maintaining it, we all go through stuff differently but there is light at the end of the tunnel so I am experiencing just some...

Hi all! I am recently diagnosed with Graves' and am looking to have more children. It seems like surgery (TT) is the safest option for having future pregnancies, but then I'm left with no thyroid for the rest of my life and may not even be able to get pregnant. I'm wondering if anyone has thoughts on being on PTU and methimazole during pregnancy. The research doesn't look great. I guess my main...

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